23andMe data sold to non-profit

If you are one of the 15-million 23andMe genetic DNA testing customers, and one of the 80% who have allowed their data to be used for research (like me), then you can breathe a sigh of relief. (Well, if you ignore the fact that 7 million of us were affected by their data breach in 2023.)

There were many customers and privacy groups who were extremely worried when 23andMe went into bankruptcy. The worst case scenario is that our genetic data would be sold to the highest bidder and a new owner would be allowed to do anything they wanted with our data.

When a pharmaceutical company won the bid in May to purchase, two dozen states sued to halt the deal. The bidding was re-opened and a former 23andMe CEO / co-founder purchased the company under the structure of a non-profit medical research organization. The TTAM Research Institute pledged to improve the privacy policies associated with the data and continue to allows customers to delete their data at will (which you can already do on 23andMe.com).

If you want to delete your data on 23andMe.com, you can find the option under their Settings menu. I personally deleted my data, but if they stop adding new features to 23andMe, I won’t have a reason to continue using it. I’ve already noticed that many of my relatives are no longer showing in the family tree, so I probably will remove my data too.